Follow us as we share our thoughts and experiences from the idiopathic scoliosis diagnosis in March 2014 through to surgery and recovery. As told from the perspectives of both parents and the (at time of diagnosis) 12 year old patient (and maybe even some observations from her little brother). Ontario, Canada.

Saturday, January 31, 2015

Avery, as a 12-year old girl does not own many button-up tops. Button-up tops, however, are the only kind she can get on. Those, and spaghetti -strap tank tops that she can step in to and pull up. She is still finding herself warm most often, so the tank tops work in the house, and I bought her a new button-up to go with one she got at Christmas for when we need to go out. She is gaining strength and flexibility every day, so think she will be back in sweaters shortly, but if not, we may need a new wardrobe to account for her added height anyway.

I don't recall if we mentioned how her hips, knees and ankles were all cut up from the rigors of surgery, so she is also finding that only a few of her underpants are comfortable as most of them the band runs right across her scabby hip bone.

Today we left her home for a few hours with one of her friends - she doesn't need constant care but I also am not ready to leave her home alone. On day one she could not put the feet up on the La-Z-Boy, but now she can - but she also can still get stuck leaning too far back and cannot pull herself up enough to get out of the chair, so someone to rescue her is a good idea.

I told her my signal to start talking about school again is when I see her reading, so she tried today, but couldn't keep her focus to make it through a chapter. She is still on the good drugs, so I give it another week before she starts thinking properly again. She is also curious how she will handle sitting in her desks, as she can currently only handle being up at the table for about 15 minutes before she needs to recline or full on lie down.

She is still using the jerry-rigged safety rail to get in and out of bed - I knew we were keeping that old sewing chair for a reason! But she pretty much skips down the stairs, so that came back like nothing.

Yesterday I was out a quest for a bath bench, which I found, but then had a laugh in the evening after Andrew went to install it - I seriously forgot the kids have a 1 piece bath/shower thing, so there is no lip on the wall side for the bench to rest on - Andrew made it work though and Avery enjoyed her first shower in 10 days.

She has had to lose her modesty, as there have been a number of things she never would have done in my presence before surgery that have happened post - surgery. Yesterday she called me (on the walkie - talkies - it is so convenient to have these as we are past baby monitors in this house) to come help her dry off after the shower as she still can't balance and bend with any ease. But she was able to get her arms up high enough to brush her hair, so still progress .

Otherwise, as long as we have pain meds, a pillow and some water she can handle most anything we have thrown at her. She eats dinner at the table with us, but gets exhausted by the effort to cut up her food. Her first food requests were all finger foods, I thought for ease of eating, but she later told me that our utensils weigh too much - things I have never considered before.

Before her appointment in Hamilton yesterday she asked if we could go out somewhere. By mid - appointment she had fully changed her mind. I am hoping she will be up for a visit to school this week - her classmates have been amazing and I think it will do her soul good to see a few more of them in person.

That's all. Just a few random things in case anyone is reading this as a guidance document for their own kid.

Friday, January 30, 2015

Today we travelled back down to McMaster Children's Hospital to visit Dr. Missiuna at his fracture clinic for our first post-discharge appointment. As with most visits to the hospital we spend more time finding parking and waiting than we do anything else. It's not normally a big deal but Pants was experiencing the worst pain she says she's felt since she came out of surgery. I suspect her latest dose of pain meds hadn't kicked in yet and the 45 minute journey in the car couldn't have been comfortable. At any rate, they got us into a room so she could lie down and she started to feel better.

Doctor Missiuna came in eventually and took the bandage off her back that was covering up her stitches. He said the wound looked great and that she should take a shower! He also said that she'd start to feel a lot better after about 3 weeks post surgery and that part time school could occur then, with a gradual approach to returning to full time school as her pain and fatigue levels allow.

We asked about physio and he said that would start at about 3 months post op. We asked about her body movement and how long it would be before she started to move around more naturally and get used to her new body. He said that at 6-12 weeks they start to feel more comfortable, and that she's still ahead of the curve.

Then, he showed us what we've been eager to see since she got out of surgery. The latest set of x-rays! I asked for a CD of the x-rays from the hospital and they (reluctantly) agreed so I've taken the liberty of including a side-by-side before-and-after view for your enjoyment. Again, I couldn't get the scaling quite right but you get the idea. All I can say is holy smokes, that's a lot of hardware.

The two images on the left pretty much say it all. She's going to have to get used to having so much of her spine rigid, but look at it! That's one good looking posture. No more deformation. No more risk of damage to her lungs or other internal organs.

On the way home we stopped to get some Subway and left Pants in the car. As I left she said, "Don't take too long. I'm probably worth a lot of money with all this metal in me." I love that she's still got her sense of humour.

Before this all went down I was talking to my friend and former band mate Jim. I asked him if he thought he could write a song for Pants. She absolutely loves music, and Jim's such a compassionate person (and a talented musician to boot), I figured this was a great idea. Well, today Jim and his band Woot Suit Riot released a song that I can only describe as amazing. Watching the video brought a tear to my eye and as soon as Pants wakes up from her nap I'm going to show it to her. She's heard a rough cut that was missing the harmonies but she was high as a kite at the time so it'll be nice for her to listen to it and see the video with her head less cloudy.

Here it is, in all it's awesomeness. Thank you, Jim and Woot Suit Riot, for doing this. It's an absolutely wonderful gesture and an absolutely wonderful song for an absolutely wonderful girl who we are absolutely proud to call our daughter.

Wednesday, January 28, 2015

I went back to the office on Monday so that's why you've seen so many posts from Jodi over the last while. Jodi's taken a leave of absence to stay home with Pants for the next month while she recovers. I get to work. So it goes.

I don't have a whole lot new to update you with except to say that Princess Pants continues to exceed every expectation. She's walking with a bit more confidence every time she goes for a stroll or up and down the stairs. She can get in and out of bed on her own. Even her appetite is returning, albeit slowly.

Avery promises to write a post soon to let you all in on the events of the past week from her perspective. Please be patient as pretty much everything she does is exhausting and typing out a big post will drain her.

In the meantime, I took some before and after photos and put them together side by side so you could get an idea of the difference. I flipped the before picture so the lines would line up a bit better so imagine her bent the other direction for the pic on the left. Also, this is far from precise. I didn't get the angles and distances quite right so the proportions weren't perfect. Nevertheless you get a really good idea of the difference.

Left: Before surgery (Jan. 18). Right: After surgery (Jan. 28)

For those who many not have seen it in a previous post the difference in height is 5.5 cm (or roughly 2 1/4 inches). Pants now stands at an impressive 168.3 cm (5' 6.25").

Tuesday, January 27, 2015

What a day! As we readied ourselves to go home, one of the nurses found us a laying hair wash thing, so I washed her hair.

Pants felt like a new person once she was cleaned up.

About an hour later, we were cleared to leave - conveniently at about the exact moment Andrew arrived, so Andrew gathered all our stuff and packed the car, and Pants put on some pants so we could go home.

The drive home was uneventful, and Pants was eager to get home. Once in the house, she took up court in the living room and asked for a toaster grilled cheese. I whipped that up for her and then she ate the whole thing! That is the most food I have seen her in a week!

I went out to fill her prescriptions and pick up the Dude - who was leaving school with one of Pants' best friends, so I brought her home for a quick visit. It was quite exciting to see Avery awake and engaged for the whole visit - leaps ahead of 2 days ago!

While I was out, Andrew managed to measure her:

Yep, 5.5 cm or 2.25 inches taller!

She requested food that doesn't need utensils for dinner, so we are going to try pulled pork sandwiches.

Night 7 was by far the best one so far. Pants fell asleep before 9 and woke up around midnight for a bathroom trip - but this again worked out as midnight is a med round. She fell almost immediately back to sleep and woke up again around 3:30 for a quick trip down the hall, then climbed right back in to bed and was asleep again before I had her covers pulled up. She slept until 6:30 and then decided it was morning.

I had a tepid shower in the family shower unit. Refreshing!

Xrays have been completed - though Pants really did not like the process, mostly because the wheelchair did not support her head and that made it hard for her to focus. I stood behind her for a bit and let her lie her greasy hair on my belly. The orderly was taking too long so I brought her back up to the ward by myself. We walked past the main entrance and she was quite happy to feel the breeze coming through the doors.

Her new nurse has said there is some sort of hair washing apparatus that can be brought in, so hopefully we can get that taken care of as she is still another week away from being allowed to shower.

Andrew is getting the house set up - we think the lazy - boy on the main floor is out best interim solution, though for the past 2 days she has preferred to be flat on her back. The fireplace living room gets some normal tv plus the netflix so it maximizes her watching options and is beside the kitchen.

So now we wait. Hair wash, doctor visit and release orders. Next update from home :)

Monday, January 26, 2015

Another productive day, though without a clear release order for tomorrow, but we are optimistic it will work out that way. The resident who was by today said physio just had to clear her, to which I replied that after she sprinted up and down the stairs, physio said they don't need to see her again, so I took that as cleared.

The steady flow of pee has finally tapered off as the last of the surgery/iv fluid build - up has been passed, so we are at a much better walk frequency.

She still has no appetite, but tries to eat something each meal - I didn't even question her when she spit out the 'grilled chicken thigh' as it must have tasted like it smelled - so she agreed to some fruit loops instead. I would love to see her actually eat like she is hungry, but right now she finds the effort of sitting up and moving food from tray to mouth exhausting. There is always tomorrow.

The other accomplishment for today was leaving the ward on her own feet to the playroom and back - without stopping as she didn't think the chairs looked too comfortable.

So I think we just need some xrays and then we can leave, but apparently there is a process to that and it hasn't happened yet. We get asked by lots of people about the release plans and have to say we don't know. Maybe I will just tell them we are leaving tomorrow and see what happens.

Just a quick update from evil night 6 on 3 B. Avery found it impossible to get comfortable in her bed, and just when she would settle down, the urge to pee would hit - like every 97 minutes - so we'd get up to take care of that, then spend 80 minutes getting comfortable... you get the idea.

At 4:00 she thought I was sleeping too soundly, so she decided to just go to the bathroom by herself. Like got out of bed, slippers on, all by herself. Unfortunately for her, she dropped her gown on the floor and I jumped up to find a nearly naked Pants just standing there. That wake up worked out as she was due for the 4 hour pain meds, and I had asked that if she was (finally) sleeping to skip that dose.

So far this morning (let's say morning started around 7) she has been down the hall to the washroom three times, nibbled some breakfast, sat in her chair for an hour and is back in bed waiting on the physiotherapist and x - rays.

I am still holding out for a nap, so my uber comfortable hospital cot is still in bed form (it converts from a chair).

Sunday, January 25, 2015

What an amazing day! I arrived at the hospital shortly after 9 and Avery was still munching on her fruit loops and banana for breakfast. Lisa, the physiotherapist arrived around 10 and Avery was pretty quick to get to standing and walked down the hall right to the washroom.

While she took a seat and tried to relax a little, we took advantage of the sink and towels and cleaned her up a bit for her first non - family visitors. The walk back she pushed her IV pole and only held Lisa's hand for comfort more than support, then turned herself and sat down without any help (well aside from me opening the back of her gown - she is very hot with ice brick extremities).

She stayed sitting for over an hour, briefly spoke with her visitors then got back to standing with little assistance and back to bed. Her IV was bothering her, so after a few complaints her nurse removed it - and didn't replace it! She said she would wait until the resident showed up, unless Avery started peeing much darker than coors light.

Her room gets lovely daytime sun, but as a result, her room gets wickedly hot while the sun is up, then cools off fast when the sun sets. Pants' mannerisms remind me of me when I was having her - hot and not wanting anything on me and no one to speak to me.

Then she ate lunch 2.3 fish sticks, some carrots and one Dad's oatmeal cookie. She needed a little rest, but at 2:00 asked me to take her to the washroom again, so since dad was gone, we called over nurse Sandy and trekked down the hall - me with her catheter bag hanging off my jean pocket as she no longer had her IV pole to hang it off of.

She walked back that time all by herself - me trailing a step behind with the pee bag. She got herself seated with no help and watched some tv for half an hour or so. I needed to grab some lunch and left for about 10 minutes, and noted her room was on the call board when I re-entered the floor so I hurried back in. Seems she wanted back in bed - so we just did that - she used her awesome squat muscles and pushed up to standing then sat on her bed and lay down - all by herself.

Around 4:00 her surgeon showed up (and scared the pants off nurse Sandy!) And ordered the central line out - but then volunteered to do it himself. Seems that one gets stitched in to place, so he removed the stitches and left the nurse to bandage it. He also told her she could remove the catheter.

So by 4:30 she was officially line and tube free and can roam as she wishes. She does have to pee in a 'hat' to measure her outputs, but that is nothing.

Oh - and in case you didn't know already, the patient services at this hospital are amazing. We were invited to a toy give away at 2. I figured McDonald's toys - but no, these were full size amazing toys. Colour explosion kits, trucks, dolls, colourings sets - and all the name brand ones. Free. Just for being here. She didn't feel up for the walk, and I was going by around 3 when they were leaving and was called over to see if there was something she might like.

I anticipate a couple more walks tonight, then x - rays tomorrow and more physio with Jill and maybe bringing Pants home by Tuesday.

Batnurse was assigned to Avery again last night but she had on a different t-shirt. This time she was Super Mario!

Avery had a rough night. She couldn't get comfortable and was complaining quite a bit. She did manage to doze off a couple times but I think I slept more than she did. There's a baby on the floor now and let's just say the poor thing has one hellofa set of lungs.

She is attempting to eat breakfast because she knows today will be a big day and she's going to need her energy. We're going for a couple walks and will extend her range past the hallway corner and hopefully to the bathroom!

The pain doctors were here and suggested Pants stop using the pump and instead switch to a combination of short term (4h) and long term (8h) hydromorphone pills with Tylenol by request.

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So the weekend PT came before I could post this and much has transpired. Pants walked all the way to the bathroom! She spent some time freshening up and looks like a whole new person. Not one to settle for one stretch goal she decided to kick things into high gear and make the walk back with nothing to support her but her IV pole and the PT's hand - and the PT says she was barely using it!

She's resting in a chair now as we await the surgeon to remove the mainline in her neck as well as a whole whack of tubes.

She was granted anything she wanted as a reward for her spectacular efforts today. Her choice? A glass of water, some silly television, and to be left alone for some peace and quiet!

Saturday, January 24, 2015

Another eventful day at McMaster. Avery showed her stubborn side this morning by refusing to do her physio until I got here, even though she knew that would be after 1:00.

As not to totally embarrass her, let's just say she ticked one of the 3 things she needed to do to be able to go home off that list ;)

The physiotherapist arrived around 2:30 and we had already gotten the room all prepared so as not to waste any more of her time. Avery was entirely bewildered about how it was she was supposed to get from lying to standing, but after a little refresher got to upright. She walked twice as far as she did yesterday and even a little faster. She'll be scooting down that hallway in no time. And Andrew and I were cleared to be her hall shuffling escorts - so if he is back tonight perhaps we will try to get that second walk in after all.

Since she was feeling a little flushed, we just did up her gown instead of adding the robe today - which only sucked for the entire time she was sitting as I hadn't been quick enough to untie the back and she found it terribly restrictive to sit in. While she was in the chair I wiped down her legs, I guess that is almost a bath. After just under an hour, she was so uncomfortable she felt she needed back in bed. We did manage to get her some fresh sheets and a clean gown. I hope we are getting closer to losing some of her tubes and lines, but have decided asking doesn't really do much for us

I was quite pleased when Avery ordered the fish sticks for dinner - and when they came she even ate 1.5 of them. Protein for the win!

Otherwise, it seems Pants keeps herself quite cool so the finger monitor keeps not being able to get a proper read. The one nurse was going to try a toe, but then felt her ice brick feet and immediately went to find a heated blanket to wrap around her toes.

So now we wait for Pants' wishes for the night. Andrew is planning on coming back, and I promised the PT I would be back by 9 am, but we'll see. Sometimes a girl just wants her (less snoring) mother as her roommate.

Last night the nurse was wearing a Batman t-shirt. She's been my favourite so far :) Avery took her Tylenol and long acting oral pain meds (only 3 pills) and then hit her morphine pump. A couple minutes later she started talking in her sleep, "When's the next course?"

"Four hours sweetie. Batman will be back in four hours."

I had a dream that a couple friends had me over for dinner and instead of offering me a regular bottle of wine they took out this wine bottle that had a peel back side. They lay it down on the counter, took a bread knife out and slid it through this lengthwise opening, and cut me off a slice of fish. I think it was a Northern Pike Grigio.

Now I'm beginning to wonder if maybe Batnurse wasn't slipping me some of the good meds in the water she brought for me.

Pants had a rough night. She couldn't get comfortable. Also, one of her IVs was leaking (down her arm this time, not into her arm) so she probably wasn't getting her full dose when she hit the PCA button. They got her IV switched over this morning and hopefully that will improve things. We need her to hit the machine less so she can transition to oral meds (a requirement for going home) but she needs to also manage the pain so she can do her physio. It's a balancing act that she hasn't quite figured out yet.

Today we are going to focus on getting her eating more and walking more. The surgical resident figures she'll be standing on her own comfortably enough by Monday so they can take some X-rays. Her goal for today is to get up and walk twice and by the end of the second trip travel almost three times farther than she did yesterday.

Aunt Stacey will visit too with a possible appearance from The Dude (who misses his big sister) so it's going to be a full day.

Jodi's going to tag me out after The Dude's bowling and I'll go home and get some proper rest before coming back later tonight.

Friday, January 23, 2015

It truly amazes me the progress Avery has made in these past 3 days! Today Avery added walking to her list of accomplishments post - surgery. After she was done with the walking and settled back down, she said the walking didn't bother her at all, but the getting up to walking and the sitting back down afterwards hurts - and that hurt scares her, so she doesn't really want to do it. And I feel like perhaps we have different motivations for this, so I will need to rethink my encouragements. Pre - surgery we had explained that in order for her to come home she needed to eat, poop, and walk. Post - surgery we have added the interim step of the removal of the catheter and all her lines including her pain pump in the pre - pooping stage. Today she said she didn't really want the catheter out because then she would have to get up and walk to the washroom ... so I need a better sell.

I was excited when I got here today to hear that he ate a whole apple. Lunch didn't go over as well with all the walking and sitting in a chair for 3 hours, but I held out some hope for dinner. Aunt Kari showed up mid afternoon with the promised snuck in mint chocolate chip ice cream from Baskin Robbins, which Avery gratefully accepted. She managed to eat a tablespoon or so of that then needed a rest. One of the excellent staff came by to see what she wanted for dinner - the Friday night special being meatloaf with mashed potatoes and peas - she wasn't interested in the meatloaf, but asked for the potatoes - with gravy - and a bowl of soup and some apple slices. This was apparently a very odd dinner order, as the guy who brought up the tray called me to make sure this was actually what she wanted. She ate a tablespoon of potatoes and a spoonful of soup then pushed the tray away. I think she is starting to get the link between food and poop.

She has been drinking tea. Maybe not the ideal beverage for a 12 year old, but on the beer scale of urine colours, she is clearly sufficiently hydrated.

The video chat with her class did her wonders, and the cheers and applause when she announced she walked was amazing - I think Andrew said it brought a tear to his eye, well it did to mine too (mind you when I stalked by one of her friend's house this morning to pass on that it would be nice if they could call her again today, I had tear then too) she really has some awesome friends. Her teacher is hoping to make it up for a visit, if not Sunday then early next week, and around dinner her Principal called to see how she was doing.

Andrew said she had been consistent with her pain pump for the first 2 days at about 200 hits each day, and unless something goes south later today, I am certain that number will be significantly less tomorrow - which also heads us the right direction to transition her to oral pain meds and losing yet another line.

Andrew and I just moved her bed so she could still watch TV while she is on her side - I hope the nurses aren't upset :)

We have had a great night / morning. Pants woke me up a few times asking for water and only gave me minimal grief when I said she had to sleep instead of watching TV.

When morning finally came she was feeling good and ate a whole apple and finished her apple juice. The first substantial amount of real food she's eaten since Monday night (though she did manage 1/3 of a piece of peanut butter toast yesterday).

The physiotherapist came by at 9am and Avery was still digesting so she asked that she come back in half an hour. When she returned we took a few minutes to get every standing up and then it was out into the hallway with her. She walked out about 8 feet and then walked about 6 feet back and has been sitting in a chair for almost two hours now. She's positively exhausted from such a busy morning.

Her whole class video called shortly after her journey to the hallway and back and when they all heard she had taken her first steps they erupted into applause and cheering. Brought tears to my eyes.

She's resting now and we're just keeping an eye on her abdomen. The drugs work a number on the GI system and we want to make sure everything is okay there. Hopefully the neck IV comes out today too.

That's it for the morning of Day 3 of post op. I have lost all sense of time.

These are all things that Pants said to me over the last 8 hours, the last one just before midnight. Her oxygen saturation levels were dipping below 90 even though she was breathing just fine (95 or better is what we want to see). The nurse was asking her to cough and take deep breaths and that makes her back hurt. I was getting her to breathe deeply and her levels were getting up into the 90's again but would dip back down after she stopped the deep inhalations. Apparently this is common when kids (and possibly adults) are on morphine and sleeping deeply. At least that's what the nurse told me. I Googled it and didn't get the search terms right I'm sure because all I found were links to terrifying studies I could have gone all week without having seen.

Stupid Internet.

The nurse went away and came back with a cylindrical container of water that she attached to the oxygen hole in the wall and then hooked up one of those over-the-ear and up-your-nose plastic tubes. Immediately her SATs spiked back. The oxygen bong was working!

I felt better and thought of Vinny Barbarino. Pants said to me, "I feel like Hazel Grace". I asked her if that was April Grace's mother or grandmother and Pants made a face; one of sheer disappointment that, had she been in a healthier mood, would have come with a "Dad-dy!" (if you know my daughter you have heard this many times before). She then informed me that Hazel was the terminally ill kid from The Fault In Our Stars. I made sure she knew that this was a little different and that she didn't have cancer, she just had morphine. She hit her button and gave me her best smile. That kid has got impeccable comedic timing.

All was well again. Now if we could just the the code red in sector whatever to stop that would be great. Also, they are performing maintenence on the code red system so if you have a code red dial extension 5555 (or get in touch with Colonel Jessup).

To wrap up the evening's midnight festivities she closed with a quote that would make Charlie Sheen proud:

Thursday, January 22, 2015

Jodi has made her way home after a short visit from The Dude and grandpa. Pants wasn't too alert but did manage a couple smiles. Dr. Missiuna came by when I was down at dinner and said that she was still ahead of where they expected her to be. That's good news but she's still in a lot of discomfort and just wants to go home.

She's due for vitals check and more pain meds at 8. The nurses will be by at 12, 4, and 8 and Jodi will be back sometime before 10am. Hopefully we can get her up tomorrow as she only spent about an hour sitting upright today.

The night nurse just came in and discovered that her left arm was experiencing infiltration. That's where the IV leaks into the arm instead of the vein. It was all swollen and tight. Also, not all her meds from the pump were getting into her system. The nurse switched the lines to her right arm and took out the IV from the left arm completely and Pants's mood improved immediately. Hopefully at some point tonight they'll take out her main line - the one that goes into her neck. Fewer tubes is good news.

Now for some questions from the press gallery:

- Will they ever remove the hardware in her spine?

- Will she still grow? If so, do they adjust the hardware?

The short answers are "no", "yes", "no".

It's much too risky to have to open her up again and unscrew the rods. It's a terribly invasive surgery that involves the spinal column so once they're done with the installation they leave it there forever. There are cases where they have been removed but this is very rare. As for growth, she is growing in two places: her legs (femurs) and her spine. Fortunately, due to her age and physical development she does not have too much spinal growth remaining (the second opinion doc at Sick Kids estimated a couple centimetres).

The area that's fused is 14 vertebrae and there will not be any further growth in that area. As such, the hardware will stay the way it is and her vertebrae will fuse together and that's the spine she'll have for the rest of her days. I gotta tell you though, from what I've seen to this point it's mighty fine looking. Such an improvement over the crooked, asymmetrical one she had before! Now, it's possible she may realize some growth from the remaining vertebrae but it will not be significant. She will still grow in her legs though so she's not done getting taller quite yet.

If anyone has any other questions just leave a comment or send us a message on Facebook or via email (potatochipmath at gmail dot com).

So Jodi sent me home yesterday afternoon. I got home about 30 seconds before grandpa came home with The Dude and he was thrilled to see me. Unfortunately I was beyond exhausted and only got to spend a few minutes with him before crashing. I managed to get up and go with him to bowling practice, so that was nice.

After a pretty good sleep I checked in with Jodi to see how our super star princess was doing. She slept but nurses come in every couple hours to poke and prod so her sleep is fragmented. Jodi didn't sleep much as there's alarms that go off constantly and just a lot of activity on the floor in general. I'm back at the hospital now and Dude is coming to visit with grandpa after school. Jodi will go back with him and I'll be staying here.

They stopped her background pain meds (a constant stream to supplement the morphine pump) so it's just the pump now. I don't see her hammering the pump button all the time; it's usually lit for a while before she hits it, so that's good.

She just rolled over onto her side, mostly on her own. I can tell she's not super comfortable but she's calm and relaxing reasonably well so that's good. Just waiting for another visit from the physiotherapist and the nurse (on her regular rotation).

Not a very exciting update, but honestly, I'd be perfectly okay with only posting ones like these from now on.

Avery has taken up court in the Pediatric wing and seems to be settling in. Day 2 pain is a little higher than day 1, but they have also taken off the continuous release med, so for pain she is relying on her pump.

The physiotherapist had her sitting in a chair, but she was done with that after about an hour and honestly looked uncomfortable the whole time. We figure her organs are settling in their new and proper homes, and that is making her not feel so great. The nurse cleared her for a Jolly Rancher hard candy, so that has been her primary sustenance. The kitchen offered her some toast and peanut butter - she was excited about that, and did manage to eat almost 1/3 of the piece when it came.

Today she doesn't want to be up, preferring to recline at about 20°. The tape on her chest is making her itchy, but not the worst. They removed one of her IV lines this morning, and we are hopeful to have either the central line in her neck or the remaining inactive line in her right hand removed today too.

Andrew has decided that he wants to stay tonight - i really think she would be fine on her own, but maybe Andrew needs this for him - but after a night of constant alarms and nurses, he may decide that we are better for her when we are rested.

I noted that her right leg, which was sitting about 1 cm shorter than the left before surgery, appeared even shorter when I looked at her lying in bed, but admittedly she wasn't lying straight, so hopefully it was just how she was positioned. I saw the surgical resident who aided in the surgery and he told me he was fairly certain I was mistaken, but until she is steady enough for x - rays, I will just have to trust him.

I stepped outside for a few minutes this morning, realising i hadn't breathed fresh air since early Tuesday. Hopefully Avery will be a little more mobile tomorrow - or they will allow her to go in a wheelchair so we can walk around a little.

Oh, Avery's question for today was how much do the rods weigh? Surgical resident figured less than a pound.

Wednesday, January 21, 2015

I am not sure I even have the words for the difference between now and 24 hours ago - or for that matter, even 9 hours ago. Watching Avery healing with such ease and grace has just lifted a world of worry off my shoulders. As late as 9:30 this morning she was still intubated and hysterical any time she came to (understandably). Her eyes were swollen shut and she had so many iv's in.

Now, she can talk - almost audibly, eat and roll from side to side. She watched a movie and decided it was time for bed - I may soon join her as I am spent and I doubt it will be a truly restful night.

I wandered in to the Ronald McDonald House room on this floor - free coffee and snacks until 11. Colonel Sanders adorns the wall outside of 3 B and in the hall one of the wings is sponsored by Walmart.

And lastly for tonight's ramblings, the hospital is selling a stuffed something and neither Andrew nor I were certain what it is - possibly a pig with horse legs :)

Thanks for hanging in here with us, I don't think we can articulate how much your collective support has helped us get through these last 36 hours.

A lot has happened since the last update. From my perspective it was hell on Earth but according to the medical professionals it was business as usual.

Avery woke up and was trying to speak and pull the tube out of her throat. They sedated her again, but not for long. When the sedative wore off it was time to remove the breathing tube. Holding her hands down and watching her struggle to breathe is now rightfully at the top of my list of moments I'd rather not have to experience again.

The good news is she was telling us to let go of her hands and sit her up and get her some water. Unfortunately we were unable to do two of the three right then but after about an hour we had her sitting up and breathing normally. The smile she gave the nurse who hooked her up to the pain meds pump was priceless!

I spoke to the resident who assisted Dr . Missiuna. They are very happy with how it all went. She's fused from T2 to L4, which is 14 vertebrae. She has two titanium rods holding her spine rigid but in an optimal posture. Holding the screws in are 27 screws, cemented into place. Why not 28 (14 x 2)? Her T4 wasn't well suited for a screw so they skipped it on the one side. Both Dr. Missiuna and the resident are happy with it. They transfused her two times throughout the surgery, using my blood and then a whack of blood bank blood. This was due to natural processes and the sheer length of the surgery. She was never in any danger.

She's sitting in a chair now and reasonably comfortable. Nurse Janet is very impressed. She continues to be ahead of the curve. We need to make sure she's taking big deep breaths to stave off fluid build up in her lungs. We do exercises with a special machine every hour.

As it stands she's the healthiest kid in the ICU and the beds are full so if they need her bed they will move her into an interim care room and than a ward room. I know its all good news but having nurse Janet right outside the window is a great comfort.

As of 2:30 Avery was back lying down and overachieving in every category. She burped and that was a big deal so they gave her a Popsicle (mango, her favourite) and she immediately started talking better. She was also allowed some water. The hard part is going to be slowing her down! She wants to do everything she can and we have to remind her to let the nurses do the work and she needs to just relax. Such a fighter.

Jodi slept not too badly and will likely sleep not too badly tonight so Avery said it was okay if I went home and got some rest and saw The Dude. I'll relieve Jodi on the day shift tomorrow. All things considered things are going as expected now in spite of the rocky night and rough morning.

My brain is mush, so hopefully this update made some sense. I'm going to take a nap.

We've been at the hospital for 24 hours. Let me tell you that the first 12 hours were a cake walk compared to the 12 that came after and the 12 that are ahead.

Extubation happening this morning. Hopefully the fever is under control. Jodi stayed in the room and got a bit of sleep after a couple bouts of excitement. I grabbed a couple zzz's on some chairs. Princess Pants is strong and fighting. Some good kicks and resistance to the nurses (trying to keep her tube in).

No machines are beeping at the moment. This is a good thing. The sound of the ventilator overpowers the quiet room. I'm afraid to move and upset the Feng Shui.

Something just beeped and woke Jodi up. The nurse came in. One of the many bags of something feeding her medication was due for anorher dose. It was the sedative. They'll be waking her up soon.

Avery needed this surgery. It wasn't cosmetic, if it wasn't done, she would have possibly had difficulty breathing, and it would have impacted her for her whole life. But I have to tell you, seeing her in the Pediatric ICU hooked up to monitors and a ventilator and looking like she has just lost a boxing match is making feel sick. She is heavily sedated and her wrists are tied down to the bed so she doesn't pull the intubation tube out. I am up now because there was just a flurry of activity because she is running a fever, so the nurse wanted to giver her some Tylenol and flip her over to her left side.

To survive the surgery, Avery not only needed the blood donation Andrew provided, but 3 or 4 times what he was able to give. So I will once again echo the sentiment - if you can, please give blood. If it wasn't for the generosity of strangers, she might not be lying beside me right now.

I kicked Andrew out of the room to try to get some sleep in the family lounge, and I have checked on him twice and he seems to be getting some sleep I am glad, because tomorrow when they extubate her, we are going to need all outer strength, emotional and physical to help her recover.

I did, however see her eyes slit open for a second, and she was kicking and flailing when the nurses moved her, so there is one big sigh of relief - all her bits work :)

Tuesday, January 20, 2015

Surgery lasted an hour and 18 minutes longer than planned. That was a stupid long extra 78 minutes to this already seriously long day. And then it gets worse. We still haven't seen her. Her surgeon has been by and said all the reassuring things the surgeon is supposed to say, and the receiving Pediatric ICU nurse did a debrief. The debrief included letting us know Pants is allergic to something she came in contact with today, so she is covered in hives, but as she is still intubated, her breathing is fine. She also advised that her pee is green from the drugs that are keeping her unconscious. She will be kept out for 24 hours - that too seems like more than I was planning on, but if that is what she needs, I am all for it. She also told us her eyes are swollen shut from being face down all day, that we were told about - I'll let you know how it really is when we see her.

Here we are. Eleven hours at the hospital and Avery has been in surgery for almost nine. I'll be honest, I'm a bit anxious and I'm exhausted. Completely exhausted. We still haven't heard word from the OR and we're taking that as a really good sign. Every time someone walks by the windows though I look up and hope it's Dr. Missiuna.

Dawn was the lovely old lady on shift two for the volunteers. She was supposed to leave at 4:30 but stuck around to see another woman to her kid and another man in to wait (we have company now!) and she absolutely insisted we go eat. Wouldn't leave until we did. So we ate and she left (but not before asking if I wanted another warm blanket - such a sweet woman). The new guy in the waiting room is playing a game on his iPhone that dings every 10 seconds. I am annoyed but too polite to say anything.

Hot in Cleveland is on the TV.

Next update likely won't be until Avery is set up in the ICU. Breathing in. Breathing out.

We are on to the 2nd shift of hospital volunteer in the OR waiting room. And down to 3 people waiting, though 2 of the are the other parent/person waiting. I asked the hospital volunteer when her shift was over, as the morning lady told us it would be before Avery is out of surgery - she kindly offered to stay after her shift so we could eat a little later (this almost made me cry) as she lives both close and alone, so she really didn't mind. Oh the dilemma.I tried to update Avery's classmates - though I am not sure that a few of them still don't think it was Avery just speaking about herself in the 3rd person.Time passes very slowly here. But my step count is over 5k :)

One parent gets to come into the operating room with the child. Guess who it was?

As you can see they give you some fancy clothes and a cool hair net (shoe booties not shown). The anesthesiologist came to say hello and explain everything. Then the surgeon, Dr. Missiuna, came to say hello and ask how Pants was doing. Then a nurse came by and we were off to the OR. Avery is going to be in one of the new ones so I was expecting a lot of fanciness. I was not disappointed.

The OR was filled with all kinds of machines and tables and people. Lots and lots of people. At one point I counted 10!

The nurses got her all hooked up with a oxygen meter on her finger, some sticky pads on her chest and back for some machine (hopefully the one that goes "ping!"), and then the anesthesiologist started her IV. She was worried about the needle but they numbed her up pretty good. He gave her some calming medicine and she started to cry. We just practiced our breathing eyes fixed on each other, me trying to make mine smile so she could see that everything would be okay. Then the first dose of sleepy time medicine was pushed through and she was out a few seconds later. They let me give her a kiss and then a nurse walked me back to Jodi. All in all I think I was in there for 10 minutes but let me tell you that it was the longest and most emotional 10 minutes of my entire life.

Now we wait.

They gave us a pager in the event we're not in the family waiting room and the doctor wants to talk to us. We can also request updates and have them relayed back to us from the OR. How long do we have to wait before the surgery is done? TEN hours. The longest ten freaking hours of our lives. Two shifts of volunteers are going to come and go and we'll still be here, waiting.

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At 9:20, about an hour after I left the OR Dr. Missiuna came into the waiting room. He said rather quickly that it was just an update so we'd know what was going on but it wasn't quick enough to prevent the heart attack upon seeing him.

He was just letting us know that Bruno the anesthesiologist was done and now it was his turn. I guess prep takes about an hour - which Dr. Missiuna said it would - as they have to get her a central line (in her neck), another IV, a catheter, a breathing tube, and then plug her into all the machines.

Now we wait.

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Random notes:

- Jodi picked up a parking pass so we don't have to spend $20/day for the week we're here

- One of the researchers came by to pick up the paperwork Pants and Jodi filled out

- I ate a bagel and had some juice but still feel sick to my stomach

- I almost cry when I read all the wonderful comments on Facebook, Twitter, and text messages

- I am really happy that "anesthesiologist" is one of the first words autocorrect suggests

Sunday, January 18, 2015

Tomorrow is supposed to be Avery's 3rd and final Eprex injection. Supposed to be. Andrew ended up getting the groceries yesterday - I don't even know why, but as a result of it not being me, nothing triggered a stop at the pharmacy. A few hours later, I asked him, and of course he did not stop - and I thought at that moment that I should call them to make sure all was good as we had some challenges last week - but it slipped my mind. I had planned to pick it up today, so after some adventures in hair dye, Avery and I went out at 4:30 - noting the pharmacy closes at 5:00 so it needed to be our first stop.We went to the pick up counter, and asked for her script, pointing out it is refrigerated. Nothing. Not even a non-prescribed one like last week. So I speak with the pharmacist. I explained that when I picked it up last Sunday, I ordered the refill for today. I spoke with both the pharmacist and the tech. The tech even took part of the script print out 'to make sure the details are correct'. The pharmacist (who has been our pharmacist since 2000) was very upset. He called every pharmacy in the city, but as my experience showed 2 weeks ago, no one had this drug in the required dose. He then called his pharmacy rep and pleaded with her to get someone over to the warehouse. In the end he asked for my cell # and promised to text me once he had confirmation. I got the text at 5:47 stating that the courier will be delivering the needle around 8 ( and the pharmacist will be in an hour early to get it) and he will text me once he has it in his hands tomorrow. He apologized again and thanked me for my patience.So it will all work out. Just like this whole surgery thing will.

Saturday, January 17, 2015

So we're down to just a few days before surgery and on Thursday Pants had her last day of school. Before we get to the awesomeness that was Thursday let me first say that the support that we have received from friends, family, colleagues, and their friends, family and colleagues has been overwhelming. However people have chosen to put wellness, love, and positive thoughts into the world, they have done it in spectacular fashion. There have been prayers, cards with wonderful thoughts, iTunes and Chapters gift cards, a pat on the back, a genuine smile, hands to hold, and lots of hugs. Overwhelming. Oh, and there were tiaras.

Tiaras? Yep, because our daughter whom we affectionately call Pants isn't just Pants. Her official nick name is Princess Pants - her name actually started out as Princess Paloney Baloney but has since evolved - the point being she's our little princess and princesses wear tiaras (duh!)

We decided as a family to pull Pants and a couple of her friends out of school on Friday so we could take them to Great Wolf Lodge indoor water park for a bit of fun. The surgery is on Tuesday and we weren't about to make her go to school on the Monday so that made Thursday her last day of school before the surgery.

For her last day of school before surgery Princess Pants decided that she was going to wear a tiara - just because she could. Her two Great Wolf Lodge friends, in a show of support, also decided that this should be a thing and agreed to wear one as well. Before too long the teacher found out, and then the rest of her class, and what they did brought a tear to my eye.

The whole lot of them, even the boys, donned tiaras for a class photo!

Unfortunately I don't think I can post the photo here as we didn't get permission from all the other kids' parents to put their picture on the internet but I can tell you that it's truly a beautiful sight.

Thanks to those who provided some headgear, thanks to her class for being such a great bunch of kids, thanks the teachers for going along with it, thanks to her friends for being such great friends, and thanks to everyone for being so supportive.

Tuesday, January 13, 2015

We had Avery's pre-op appointment today - after a slight detour home when Andrew asked if I had the pre-op yellow envelope and I realized it was at home still. Anyway, we were only minutes late with that detour and were into see the 1st person - the Child Life Specialist. She was lovely and walked Avery through the day of surgery. She also warned Avery that hospitals can be quite boring so she should pack lots of entertainment - feel free to comment with any ideas to help her pass her days - thanks to a hefty Christmas haul she just bought 7 new books, but she has lots of itunes money to download or rent movies with as well.Next up was her first health study invitation - this one is apparently worth 4 hours towards her volunteer hours but I am not sure if she can earn high school credits in grade 7. This study is aiming to better understand immune-metabolic connections to health a study of the role of the immune system on body weight and metabolism. Then we saw the nurse. She was lovely and went over her bits, then ended to take some blood from Avery. While the blood work was happening, we were approached for a second survey focusing on pain management during scoliosis surgery and treatment. This one comes with a $10 gift card for one of 3 places. After a failed first attempt at blood collection, the nurses had success and we were back in the waiting area.A few minutes later we were into see the anesthesiologist. We expressed the potential allergy to anectine, but we're assured that it would not be used for this surgery and in fact is rarely used at all these days. And then we were done. We are due back at 6:30 am on Tuesday, January 20th for surgery. One of us can sleep at the hospital with her all week. We'll see what makes sense for us.Now it is just enjoying this week. Great Wolf Lodge is in 48 hours so I think we will focus on that.I am hoping Avery will let me take some before photos - so we can tell the full story once this is over. She did measure in at 5'4" today - and will likely be 5'6" this time next week.

Tuesday, January 6, 2015

We saw the surgeon today - the last time before surgery. Avery got in some bonus round x-rays and measured in at 62°. Today's x-rays took forever - or about an hour, but I am certain we have never waited longer than 20 minutes - I mean we took so long, the surgeon came in to x-ray to find us.We had time for a few questions, and then the surgeon stopped us to ask about Avery's injections, to which we all looked at him a little puzzled. Turns out ideally she would have started these Eprex injections a couple of weeks ago to help stimulate her red blood cell and bone marrow growth in advance of her surgery. So we left with a prescription and instruction to start this today with her family doctor, and if that wasn't possible, to head back to Hamilton tomorrow so he could do it.I should have realized that this was not going to be easy by that offer. I was driving, so I had Andrew call the nurse to ask if this could be done. When she called back, it was a little special, and is normally administered in a hospital, so she needed to get clearance to do it. After we got home, she called back and said they could do it at 2:50 today. This was at about 2:00.Next up, I thought perhaps I should call and confirm if the pharmacy had some. I called ours - no go. I called the Shopper's down the road - no go. I called the other pharmacy down the road - no go, but that pharmacist atleast had a suggestion, so I followed it. Success at the Preston Medical Pharmacy! Though there was no way we were going to make it to the doctor's office for 2:50. In the end, we made it by 3:45, including a stop for cat food and to our normal pharmacy to transfer the script over so the next week's dose isn't such an adventure. She was called in almost immediately, and as fate would have it, the nurse who was administering the drug had spinal fusion surgery just last year. She did she'd be the one giving her the needle next week too, so if Avery thinks of any questions, she should just bring them with her.And as the day ended, my MiL came by to bring Avery a prayer shawl. T minus 13.

Monday, January 5, 2015

2.0% of girls between the ages of 8 and 18 are affected by scoliosis. 0.5% of boys between those ages are affected by scoliosis. Together that means that 2.5% of children Between 8 and 18 years of age are affected by scoliosis. 5 out of every two hundred people, and about 17 500 000 out of the whole world. In percentages it seems really small, but when you look at the grand scheme of things, you realize that lots of people have it. Some people may only have very minor curves while others look realy funky.I know I'm not the only one, but sometimes it feels like it. I have surgery in 16 day but it still feels like a bad dream that I'm just about to wake up from. It just started feeling real last night, but I'm still hoping that I'll just wake up. I wish I could.

Saturday, January 3, 2015

I'm scared. I'm scared that it hurts when I stand for too long. That it hurts when I put on my socks or tie my shoes without sitting. I'm terrified that one day I'm just gonna wake up and find out that the surgery happend and now i have to heal it all. I'm terrified to cry. Because whenever I feel like crying, I also feel like every one is gonna laugh. And then when I finish crying, I feel really stupid. I know that after my family reads this they're going to a be like " oh Avery you have a right to be sad. Go ahead and cry, no one will laugh". And I know that that's probably true but it doesn't make it any less scary. It just makes me think that there's all the more reason to be scared. Anyways, that's all.